Students, staff, faculty, and guests came together June 8 to screen The Immortal Life of Henrietta Lacks, an HBO production starring Oprah Winfrey as Deborah Lacks and Rose Byrne as Rebecca Skloot. The event, sponsored by the Dell Med Office of Diversity, Equity, and Inclusion and the medical student organization MESH (Making Equity Standard in Healthcare), began with snacks and a challenge to the audience: observe the film for its emotional story of love, loss, struggle and redemption — and also for the empirical knowledge gained as medical students in order to kick start a discussion on medical ethics and race, and how to move forward following the screening.
The film shifts between two periods: the years between 1920 and 1951 and the first decade of the 21st century. Set in rural Virginia and Baltimore, Maryland, we see what the vestiges of Jim Crow and de facto segregation did to a community, its residents and society. Winfrey’s powerful portrayal of Deborah Lacks overcomes the shortcomings of the script by shifting the story away from Skloot’s narrative to that of Deborah Lacks, a daughter longing to know something — anything — about her mother. A toddler when her mother died, viewers of the film get a peek into the secrecy surrounding Henrietta Lacks’ death. For Deborah, this story marks a lifelong quest to know something about her mother and what it means to be the daughter of the immortal cells of Henrietta Lacks.
The discussion following the film produced a tremendously informative dialogue for everyone present. A few thoughts to take away:
“We Don’t Talk About the Dead.”
Sadie, played by Leslie Uggams, utters these words when Deborah introduces the author at a family gathering early in her research into writing the book. These six words — we don’t talk about the dead — offer important context about the unique cultural beliefs and practices regarding death and the social reality Deborah experiences including the fact that none of us gets out of here alive. Yet somehow, her mother’s cells remained alive. With flashbacks and footage designed to appear as archival, the viewers come to know something about the complexity of a family, the loss of its matriarch and how race, class and gender play out during the mid to late twentieth century.
A Pound of Flesh
The taking of Henrietta’s cells without permission, a standard practice at this time, represents a fundamental breech of medical ethics by failing to respect the autonomy of the individual as well as failing to obtain consent. Notwithstanding, early in the 20th century (1914) Justice Cardozo wrote in Schoendorff v. The Society for the New York Hospital that “every human being of adult years and sound mind has a right to determine what shall be done with his own body.” This ruling, focused on a surgical procedure, established the legal basis of informed consent, but we must ask: for whom? Henrietta Lacks, a black woman, and Mary Schoendorff a white woman, share not only their identity as women but also, they both were economically disenfranchised. Their social determinants of health, where they were “born, lived, learned, worked, played, worshiped and aged,” shaped more about how they would experience life than virtually anything else. Race is important—but it is not the sole determinant. Race shapes one’s life experiences, including the experiences of illness and disease.
Profiting from Loss
Henrietta Lacks’ cells were taken from her body without her permission, ultimately commodified, and sold, “launch[ing] a medical revolution and a multimillion-dollar industry,” all while her family continued to experience economic hardship, poor health and limited access to health care. How can a piece of one’s body become someone else’s profit? Legal precedent states “. . . no law prohibits a physician from conducting research in the same area in which he practices. Progress in medicine often depends upon physicians, . . .[to] conduct research while caring for their patients.” What is prohibited is the failure to obtain consent as outlined in the Common Rule (1991 and 2017). Cardoza was right — every person of sound mind has the right to determine what can and will be done to one’s body. Regrettably, society has not and continues to waver in its respect for all of its people. Unfortunately, medicine too falls short of this standard.
The Future is Now
Our discussion closed with identifying sources of direction and “moral courage” as we sought to “rethink everything” we saw and thought we knew. Moral courage represents the wisdom, the compassion, and the ability — even in the face of adversity — to act ethically. The era of the paternalistic physician, a relic of a past medical tradition replaced by a new paradigm of shared decision-making, represents an opportunity to do and be better at practicing the art and science of medicine. As the final sentence of the Dell Medical School Hippocratic Oath reads: May I always act so as to preserve the finest traditions of my calling and to elevate the profession to achieve a greater impact in healing the sick and preserving health.